Lou Melgarejo 2011 Speak Out Award Recipient

Autism Speaks hosted its 6th Annual Autism Law Summit on October 20-21 in Salt Lake City, Utah attracting 100 parents, advocates, lawyers, legislators and lobbyists to discuss autism insurance reform through legislation and litigation. This year’s summit was co-sponsored by the Utah Autism Coalition and the University of Utah S.J. Quinney College of Law.

At this year’s summit, Lou Melgarejo received the “Speak Out” award in recognition of “Fixing” Autism, a video he produced in honor of his daughter Bianca. The “Speak Out” Award was created to recognized those who go above and beyond in raising awareness of autism to the public through the media. As part of the award, Autism Speaks Co-founders Suzanne and Bob Wright will make a personal donation of $1000 to the Autism Speaks mission area of the recipient’s choice. Watch the video and read Lou’s acceptance speech below.

“Fixing” Autism

Lou’s Acceptance Speech

“It is a real honor and a privilege to be here at the Annual Law Summit. Before I get started, I thought I should warn you that Representative Boehner has teased ME for crying too much.

This marks the second time that I have watched my “Fixing” Autism video in its entirety. It’s really tough for me to watch. I have, however, tried to read each and every comment, blog, status update, tweet about my video. The response has been overwhelming. It sounds as though I have shed as many tears reading the comments as my video has elicited from those that watched it.

As of today, “Fixing” Autism has over 93,000 views. As flattering as that is, it also makes me a touch sad. That number needs to be way higher. Those that are aware of the video and its message to end health care discrimination against people with autism spectrum disorder, and the disparity in funding are already converts. I am glad that they could take comfort from the video, but really they are not the ones that need to see my video. It is the kid that bullies a shy and awkward classmate, it’s the cranky old lady that yelled at my wife for having our daughter on a “leash”, it is the person that glares at you with a scowl because you can’t appear to control your kid, it is the family member who, when you tried to confide in them that your child was on the spectrum, they tried to tell you that your child would grow out of it… instead of just saying, “I’m so sorry. How can I help?”

The person I am trying to reach is me. Not the guy that is standing before you, but the guy that I was only 6 years ago. That guy is funny, liberal, sensitive, accepting of people with differences, but so caught up with the day-to-day minutiae of his own life that he can’t be bothered with charity work. “Everybody has a cause about something” I would say. I was so put off by everybody championing whatever disease, condition, country, animal, religion people were trying to raise money for that I started my own grassroots movement on Facebook… “The Cause Against Causes”. My first real advocacy.The goal of my movement was apathy… if you were up to it. What at first I thought was funny and tongue in cheek, now makes me sad and ashamed. I cringe when I look back at where I was.

What a shame that is took my own child becoming diagnosed with ASD for me to be motivated to become an advocate for a cause. But I don’t think that my story is an abnormal one. The vast majority of people championing a cause are doing so because somebody they know has been affected. These causes are personal. They mean something to people. It isn’t just about shaking others down for money.

So how do you get a guy like me to care about a cause if they are not affected? That is the question that runs through my mind pretty close to every waking minute of my day. How can I affect change? How do I make people see the injustice I see?

I know TV, and I know a little bit about story telling. So I have to use what I know. That is how the video came about. I have worked in the television industry for 18 years. But I can honestly tell you that of all the big events I have covered and shows I have directed, there isn’t one thing that I have done that comes close to the pride I have for my “Fixing” Autism video. The fact that an organization that I believe so strongly in like Autism Speaks helped me to spread the message, and is honoring me today with this award means more to me than I could ever put into words.

Thank you Autism Speaks. Thanks to Marc Sirkin for his amazing support and reaching out to me on Twitter to tell me how much he believed in my message. Thank you to Mike Wasmer for your support and for letting me know that my story is not an uncommon one. It is good to know you are not alone. Thank you to the Wright family. Bob doesn’t know this, but in all my years in TV, the only other recognition I have received was from NBC when he was in charge. Most importantly I want to thank my family: Thanks to my parents for all of their support;to my beautiful wife Elsa for hanging in there on this ride, life can knock you down sometimes, but we have been fighting back and trying to not let it destroy our marriage. Thanks to my kids Sofie and Luis. They are the greatest siblings in the world and they fill my life with laughter every day. And to my beautiful Bianca… she is a priceless gift. In six short years, she has taught me more than my previous 34. I am a better person for her being in my life and I love her without condition.

In closing I just want to let you know that I am aware that I am preaching to the choir here, but the choir has a very important job. It is up to the choir to fill people’s ears up with music and often times to move people to join the congregation. Let’s make certain that when we leave here this weekend that we are making noise, not just to those that are already in our flock, but to the world in the hopes that our numbers will rise. Thank you.”

Congratulations. The award is well deserved. Your video is incredibly moving. Thank you from an autism mama who will NEVER shut up and go away until autism is fixed. All the best to ou and your precious family. <3

Thank you Lou for all you do for your daughter Bianca. In doing so you are not only passing on your words of advocacy for her but also for my son and every other person on the specturm. And yes I cryed also. I do a lot of advocating for not just my son but for all that suffer on the specturm. Your video was very moving I will share it with all that will watch and hope that some day we can find the cause for autism.

As an Autistic person I feel we are being bullied:
Advocacy without representation is not advocacy it is bullying.
Hate speech is being spread around about Autistic people. Any study confusing our inability to recognize faces with our ability to feel empathy is not only untrue, but also dehumanizing.
Money collected on our behalf is being wasted; it is not in our best interests to give our money to people from an industry that routinely sacrifices our lives for a profit.
It is not in our best interests to lobby the government to force insurance to pay for treatments that are inhuman.
It is not in our best interests to deny jobs to well qualified Autistic people so we can afford to pay 6 figure incomes to people who are in good standing with the pharmaceutical industry.
It is false and ridiculous to dismiss our concerns by saying that we are selfish and don’t want a cure, we care deeply about others on the spectrum and we want to see them treated humanely.
Autism Speaks does not speak for me.
Please support me by not donating money to this fake charity.

Congratulations Lou. Those who really look carefully at your message understand your dedication and commitment to your daughter. She is lucky to have a father like you.

As for some of the rest of you, please move beyond your bitterness and recognize that if the world had more Lou Melgarejo’s advocating on behalf of those with autism this world would be a much better place.